Blog

A Day in the Life of a Family Living with SLC13A5 – Windisch Family

Nicole and Rich are the parents of Meredith (2-years-old), who has SLC13A5 Epilepsy. James (16-years-old) and Matthew (12-years-old) are Meredith’s older brothers. A Day in the Life Meredith is our little chickadee, as her daddy calls her. She is always smiling and ready to go. She loves going on adventures no matter how big or […]

Tessa’s Superhero Story

A Day in the Life of a Family Living with SLC13A5 – Geslin Family

Maria is the mother of Alice (5-years-old), who has SLC13A5 Deficiency. Maria and Alice live in Luxembourg, with Alice’s father, sister, and maternal grandmother. A Day in the Life Alice is our rare pearl – this is what we call her, since SLC13A5 Deficiency is so rare. Even if she can’t walk or talk, she […]

A Day in the Life of a Family Living with SLC13A5 – Prestine/Pae Family

Erika and Andrew are the parents of Ellie, who has SLC13A5 Deficiency. Our days with Ellie (who is almost the big 4!) are typically filled with a lot of love, patience, and laughter. We like to call her our little Sour Patch kid. She is full of spunk, stubbornness, and mischievousness, but she is also […]

Shopping for Kids of All Abilities

By: Kim Nye – Mom to four great kids, ages 6 to 15. The holidays are here!  It can feel difficult to shop for a child with developmental delays.  My friends and family are always asking for gift ideas, especially for Tessa (15) and Colton (6) who have SLC13A5 Deficiency.  To make it a little […]